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Joined: Dec 2006
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First off, I wanted to say, I love how positive everyone is here! It serves for a lot of hope for people, and I can see that in each post.

I just wanted to say, is that I know you aren't doctors, but you are more experienced than my mom on this subject.

My boyfriend seems to think he has oral cancer. We've been doing research on-line together, and read a lot of the subjects in this forum, and there are things that indicate he does, but then, there are some that don't.

Here are his symptoms:
-Left cheek goes numb every once in a while. (I can explains this because in September he got his left ear pierced and for a while he thought he was having a stroke cuz his cheek went completely numb, until he took it out, and will now periodically go numb) and his left lymph node in front of his ear was swollen, and not painful, since he took his earring out, and is finally starting to go down.
-He says that at the back of his tongue, at the sides/on his tonsils, it feels like something is biting him sometimes (This scared him because the word "cancer" means crab in a different language. Which scared him more.)
-Underneath his tongue hurts when he uses listerine

His signs:
-He has a red spot, which has been there since about mid of October, but it's small, like the size of the diameter of a piece of yarn (That's kinda small, I think.)
-His tonsils look a lot smaller than they used to
-His uvula hangs more to the left than the right (Which doesn't make sense because the numbness is on the left, and the uvula is known to point away from the cancerous cells.)
-On the sides of his tongue, at the back is a big red bump, which the doctor said is normal.
-It looks like underneath his tongue has gills. And that is where it hurts when he uses listerine. Lol. I don't know how else to explain it. Like at the sides.
-His neck, like underneath the chin, looks and feels a little swollen at the sides, I don't think they're lymph nodes, just because there are two and there are in symmetrical areas.


He is afraid that if it is cancer, that it was probably caused by the HPV virus, as he is only 18, like me. He won't even have sex with me anymore, he is so scared to pass it on to me. Which if that was the case, I would already have it, and have not yet had a pap smear, but am working on it. (My doctor said I don't need it because I just had one in June, thanks doc, but no help). He won't even kiss me, except on the cheek or the forehead. We've been going out for 2 years, but we broke up in september, and he had sex with another girl, and we got back together end of october, and he says that is when he probably contracted HPV.

So I was wondering, For those caregivers, and the patients, and survivors out there, what were the first signs/symptoms you noticed that made you go to your doctor?

He's gone to the health nurse and the doctor at our college multiple times, (at least once a week from mid oct. the first sign of the lymph node-dec 15) about it, but he just says it's cankers from stress. But canker sores go away, and he completely ignores every other sign/symptom. So he prescribed Minocin, which is a skin antibiotic, but it just made it worse. So my bf went to his MD, 3 times since, and she just said they were canker sores/normal and to gargle salt water, and after he went back for the second time, prescribed him Biaxin, a really expensive, and really good antibiotic, which made it worse as well, and when he went back for the third time, she was running 50 minutes late and said he'd be fine, and completely rushed him, and couldn't tell her everything. There have been no tests or anything done. Not even a swab to see if it was strep throat or something.

He is having anxiety problems because of it, his school grades will go down, he keeps stressing about it. And sure, I want him to find a cure for whatever it is, but I don't think it is cancer, but you never know.

Right now, he just needs some clarification, and direction. He can't just call up an ENT, and say, "Hey! Take a look at my mouth and gimme an MRI!" So he has no idea what to do, and the doctors keep telling him it's nothing.

Anyway, I hate to sound like a worry wart, but he worries bout it too much, so much that I don't feel that intimate with him anymore, and he's always tense, and I don't even know what to do myself. It's ruining our relationship. That sounds kind of dramatic, but I don' know how much more of his anxiety I can stand.

Anyway, again, I know you aren't doctors, but you're more experienced than my mom, and we don't know who else to go to.

Thank you!

Joined: Sep 2006
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El,

I think it would be best to make an appt with a qualified ENT and make a list of questions to ask him in advanvce of the appt.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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Amen, David....
Don't count your chickens, before they hatch!
It ain't cancer until a highly trained pathologist determines, on a cellular level, "It's Cancer".
Relax, life is to short to worry....
Darrell


Stage 3, T3,N1,M0,SCC, Base of Tongue. No Surgery, Radiationx39, Chemo, Taxol & Carboplatin Weekly 8 Treatments 2004. Age 60. Recurrence 2/06, SCC, Chest & Neck (Sub clavean), Remission 8/06. Recurrence SCC 12/10/06 Chest.
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GEtting your questions answered and your nerves calmed is as simple as getting to a good ENT who is qualified to diagnose for Head and Neck cancer. And if you,as the female partner in this relationship are really worried about the HPV virus, insist on getting tested again, for your own peace of mind. My grandmotherly adv8ice is to "Quit stewing and get going". Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

:
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The message this forum is trying to make is 'Early Detection Saves Lives'. Take that to heart. Your friend is experiencing symptoms, be it cancer or not. Get to the best ENT at the best CCC you can find and let us all hope it is something else. But do NOT ignore the symptoms just because he does not fit the profile. Since you are in Canada, I think getting an appointment may take longer so it is all the more important that he gets an appointment NOW.

Here's hoping it is nothing but let's find out.

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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Posts: 493
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Amen Amen

Please help/have your BF heed the above advice, that way you'll know for sure what to do.

Tim


Tim Stoj
60 yr old. Dx Jun 06 with BOT Stage IV. Neck dissesction on 19 Jun 06. Started Tx on 21 Aug 06/completed 33 IMRTs and 3 CT (2 Cisplat & 1 Carboplat) on 5 Oct 06.
Joined: Dec 2006
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OP Offline
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Joined: Dec 2006
Posts: 6
Thanks everyone! But I think you need a doctors referral to an ENT, and every doctor my b/f has talked to just seems to not care about any of the symptoms. To me, they sound serious, it's not like strep throat or anything, but still, it doesn't seem right.

And I'm not worried that much about the HPV virus in me, but still, my doctor refused to give me a pap smear, which I don't think was very.. Professional of her, but still, I'll go to our health nurse at the school.

Thanks everyone!

Joined: Nov 2006
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Tell your boyfriend to get to the ENT NOW! The experienced people on this site know what they are talking about. My son had a sore under his tongue which he ignored. He thought it was from biting his tongue. It kept getting worse but he was out of a job with no health or dental insurance so he continued to ignore it until it got so bad he went to the dentist who referred him to an oral surgeon who did a biopsy and found a Stage 2 cancer. He had surgery and radiation treatments which is no pic-nic for everyone concerned. There are more and more young people being diagnosed with this type of HPV cancer especially if they are sexually active. PLEASE get your BF to a qualified ENT!


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



Joined: Nov 2006
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Posts: 95
Hi,

I wanted to share my husband


Barbara S
C/G to Michael age 64, stage 1 base of tongue SC cancer and a stage one for a couple lymph nodes, diagnosed 09/12/06, IMRT radiation 10/24/06 to 12/05/06 , last PET / CT scan 11/7/11 - still cancer free!!!
Joined: Jul 2006
Posts: 446
"OCF Canuck"
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Elephant shoes, were are you in Ontario? I'm a Canadian as well, and an oral cancer survivor. There are some of the best cancer centers in the world in our country, several in the Province of Ontario. If you can't get a Doctor to refer you to an ENT, go to the ENT directly. If that fails, talk to the patient advocate at the cancer center closest to you. I'm more than happy to make suggestions on specific locations, etc. if you'd like them. Drop me a PM
much luck
Wayne


SCC left mandible TIVN0M0 40% of jaw removed, rebuilt using fibula, titanium and tissue from forearm.June 06. 30 IMRT Aug.-Oct. 06
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